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Caregiving

"Early moments of the dawn used to be my coveted hours, a time filled with the rich possibility of the day. Instead, I now felt our life as a family cinched tight as a belt, circumscribed by Bob’s injury. Those mornings, I barely held it together while I got the kids dressed and off to school and then my husband out the door to his daily rehabilitation therapy. Finally, one morning when they had all gone, I just collapsed, fell onto the couch sobbing in the quiet hush of my home. These were gut-wrenching, back-heaving sobs. I was crying out the whole last few months and tasting the fear of the unknowable coming years."

For people like Lee whose loved one sustains a traumatic brain injury, especially a moderate to severe injury, becoming a caregiver can happen suddenly, without warning. One day you are in the office answering emails or out in the garden pulling weeds and the next your loved one is seriously injured and everything has changed.

Few illnesses or injuries result in the devastating and overwhelming damage that can accompany severe brain injury. The loved one who sustains a brain injury is no longer the same person: he or she may behave differently, think differently, and take in the world differently. And when one member of a family changes, the entire family changes.

Learn how to navigate your new role.

Taking care of a loved one with traumatic brain injury can be too much for one person to juggle, especially if the injured person requires full-time care. As soon as possible after the injury, consider holding a family meeting to figure out how family members can work cooperatively. The more people who help participate in care, the less alone a caregiver feels. A circle of care can include family, friends, neighbors or paid caregivers.

According to research, people with brain injuries who have more support from family and friends — something called family-centered care — tend to have a better outcome recovery and reintegrate into their community with more ease.

Support means different things in different cultures, just as it does for individual families.

Where and how

There are many variables to being a caregiver such as age, health, finances, employment, family responsibilities and the severity of the family member’s injury. Some people will be able to care for their loved one at home full-time, while others may need to find a full- or part-time residential facility for their injured family member.

Take Care of Yourself.

How can caregivers cope with their situation when there seems to be no end in sight? Here are some coping strategies for caregivers that may help:

Take time for yourself to avoid compassion fatigue. You can’t take care of a loved one if you are physically and emotionally exhausted.

Don’t ignore intense feelings like depression or anxiety — talk to a health care provider if you have concerns about your wellbeing.

Find a caregiver support group.

Keep a regular schedule for yourself.

Be assertive about getting the support and help you need.

Educate yourself about available resources.

Get ideas from someone you know and trust, maybe someone who has experience as a caregiver.

Be creative about changing roles and responsibilities within your family.

Above all else, be kind to yourself. Give yourself credit for all that you do.